When Bill Yeates was diagnosed with dementia in 2019 he felt lost and overwhelmed, and didn't know where to turn.
But his reaction and experience is not unique. Some 60,000 Australians a year will hear the devastating news of a dementia diagnosis and many, like Bill, will despair for their future, lose hope and not know what to do next.
However, a new program developed by experts from Australia and overseas could help the newly diagnosed adjust to life with dementia.
COGNISANCE, an international research collaboration, has developed Forward with Dementia, to improve the diagnostic experience, post diagnosis support and connections for people with dementia and their carers.
"In the past, people were told nothing could be done," said Scientia Professor Henry Brodaty, Project Leader and Co-Director of UNSW Sydney's Centre for Healthy Brain Ageing (CHeBA). "They may have been given some medication, asked to return in six months, told to get their affairs in order and warned about driving. And that was it.
"Those days are over ... or they should be! We can do a lot better."
Forward with Dementia was jointly planned and developed by leading researchers from UNSW Sydney, the University of Sydney and University of Wollongong in collaboration with colleagues from Canada, the Netherlands, Poland and the United Kingdom. It aims to help those people diagnosed with dementia understand the next steps and to change outdated perceptions of living with dementia.
"People with dementia can live positively for many years. There are treatment strategies and we need to spread the word and assist diagnosticians and other health workers to improve their practice. By working together, we can help set people newly diagnosed with dementia on a better path," said Professor Brodaty.
Program resources, developed with the help of people living with dementia and their carers, include a website forwardwithdementia.org/au to guide people in the first year following diagnosis. The website offers information, advice, and tools, and shares experiences and strategies used by people with dementia and their carers.
Website tools include a checklist of questions for people to ask their doctor, suggestions for how and when to share their diagnosis with family and friends, and planning tools to achieve their goals and overcome barriers caused by dementia symptoms.
Professor Lee-Fay Low, Professor in Ageing and Health at the University of Sydney, said the website provided the information newly diagnosed people with dementia said they wanted and needed but struggled to find after diagnosis.
"They told us that much of the available information was too generic, and mostly focused on more severe dementia. It was hard to find practical advice about what they should do after diagnosis, like how they could get rehabilitative treatments and maintain their independence. So this is what we have aimed to provide."
Forward with Dementia is also targeting doctors who diagnose dementia. The program has an educational video and tools for doctors including a diagnostic checklist and information and resources they can provide to newly diagnosed patients."
"We've consulted with diagnosticians throughout Australia, including specialists and support staff in Memory Clinics," Professor Brodaty said.
"Many doctors find telling people they have dementia very difficult, so we're trying to improve communication and encourage doctors to start dementia care planning and make referral to essential services, including counselling and allied health."
Mr Yeates believes the program will be very useful in helping others adjust to life with dementia.
"The Forward with Dementia program is really important as it guides people and their carers on their next steps. It gives them hope and will also reduce some of the stigma and stereotypes about living a life with dementia," he said.
The Forward with Dementia program was funded by the National Health and Medical Research Council and the European Union Joint Programme - Neurodegenerative Disease Research (JPND), a global research initiative aimed at tackling the challenge of neurodegenerative diseases.
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